endo pain help

hi

I wondered if anyone is in the same position and can give me advice. Ive had severe pain for 6 years every month in the same place its that severe i often pass out from the pain if i dont have the right pain killers. I had a lap for diagnosis and removal 3 years ago my gyni then told me he had cured my endo. Three years and two gynis later im stuck i have a problem with any kind of contraceptives they make me angry and very depressed ive tried 7 kinds now. My body has got used to pain killers over the last 6 years and I have sipped a disk in my back twice this year, so my pain medication is now at max level, so when endo hits every month i have to go to my local accident and emergency . I've done this for the last 5 months and they give me morphine and send me home, im waiting see specialist again. Im 30 i live with my parents still . i have a deposit to buy a house but i dont know how i can move when every month i need go to hospital, Ive had enough endo has destroyed my life , i can't hold down a job , Its so hard to have friends and my life is going no where my fellas brother has just had a baby and that is so hard to deal with after ttc for 5 years. Im open to suggestions of how i can get on with my life.

I did have a lovely 9 month pain free gap because i put my body into early menopause i would recommend that to anyone it was bliss.

4 Replies

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  • Oh Kerri sounds like you are having an awful time of it at the moment. Have you been referred for IVF at all? I have severe endo and have enjoyed being much relieved of the pain for the last 15 months since my excision surgery. Whichever doctor told you that they cured you of endo I am sorry to say was a liar (which you probably know judging by the return of your pain...) We have been going through IVF for the last ten months or so, no luck just yet, but once we have had a baby my consultant's recommendation is to have a hysterectomy!

    If you haven't been referred for IVF yet would you consider asking for a referral and perhaps going back on the injections that put you in menopause whilst you wait? I know how hard it is to carry on putting yourself through pain because you are trying so hard to have a baby, it's a really difficult situation to be in xxxx

  • Thanks for your reply , I wont go through IVF until me and my partner are living together, i dont want to go through it whilst im living at home, Im struggling to move because i carnt hold down a job and can not pay bills.

    Im thinking the injection again could be my only hope.

    hope your treatment works for you x

  • Can you talk to your gyno about going on menopause inducing drugs such as lupron or zoladex with non-estrogen HRT? That way you can use it longer without risks of bone and heart health, and without estogren the endo won't grow.

    Did your doctors tell you why you have had 2 slipped disk?

    I'm asking because with endometriosis a lot of us have an overly tensed too strong pelvic floor with an inability to relax so it doesn't move properly and can cause issues all over the place. The reason why it becomes tensed is because when your in pain all the time your muscles clench up, the pelvic floor is full of muscles and it tenses up itself, not to mention fetal position (which a lot of us do, I won't deny it works great for pain) tenses up the pelvic floor really badly.

    Plus if you haven't been doing a lot of stuff because of being sick and in pain it's hard to do anything because your muscles become weak. I'm speaking from experience last year I was a ballet, contemporary, belly dancer, and worked out everyday than I got bad a few weeks into the year and by July become bed ridden, it was harder to do almost everything but with the help of a few physiotherapists and a nurse practitioner I was able to get to school a few times a week and learnt ways to manage the pain.

    I had to do really easy yoga for the first month and I could barely hold the poses because of how little strength I had but I slowly added more time to each one, first 10 seconds than adding 5 more each day till I could stretch it out.

    I also went to pelvic floor physiotherpy once a week.

    I understand it feels like you can't do anything but you can, try to push through a little, I learnt about being comfortably uncomfortable where you find a baseline that you can do things for don't go past that until you feel healthy enough to, then slowly pace in more exercise.

    Your body will only get weaker and sicker with less exercise sadly, 30 minutes of going to a mall caused excruciating pain for me now I can be out for a few hours. Your body needs to rehabilitate, surgery will help with this but a physiotheprist can also loosen adhesions while you wait.

    Also nerves become screwed up because of chronic pain especially the pathway that shares the pain to your brain, so overtime our bodies do become more sensitive to pain. You may have heard of phantom pain, where a limb is removed and a person still feels the pain that's because the nervous system remembers it and has become distorted from the injury or chronic pain that led the limb to be removed.

    To turn off your overactive nervous system use 3 fingers and move in a straight line over your legs on all sides, on your abdomen horizontally, and then on your arms, get someone to do your back. Use a light pressure (enough that it doesn't tickle or tingle) this will stimulate your nervous system.

    On fhe days you can't do stuff watch a movie that you like to doing something you like. Try out a hobby that can help build muscles such as knitting, crocheting or hand sewing, even writing.

    Can you join a chronic pain support group? Or endo support group, just knowing others are in pain and you aren't alone can help people a lot.

  • Thanks for the reply its nice to know im not the only one going through this and i never associated my back with endo but it makes sense now.

    thankyou

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